On Film: autism and the myth of the "refrigerator mom"

Six years ago J.J. Hanley noticed that her three-year-old son, Timothy, was acting strange. "He was not speaking, and he wouldn't look at me or anybody else," she says. "He wanted to be alone all the time and had some repetitive behavior and a sensitivity to certain sights and sounds."

Her pediatrician "looked at my son for about 30 seconds and said, 'Nothing is wrong with him--it's you. Get off his back. You are anxious and overbearing--leave him alone.'"

Hanley's son's condition steadily got worse. After seven months another doctor diagnosed Timothy as mildly autistic. Hanley, who lives in Wilmette, was "devastated" and spent three weeks in shock before deciding to educate herself. A former journalist, she devoured everything she could get her hands on about autism. As she read, she kept coming across references to "refrigerator mothers," a term coined in the 1960s by Bruno Bettelheim, director for 30 years of the University of Chicago's Orthogenic School, a Freudian-based treatment center for disturbed children. His influential 1967 book The Empty Fortress: Infantile Autism and the Birth of the Self blamed autistic behavior on the mother's emotional frigidity. His ideas were later discredited--autism is now widely considered a neurological disorder of unknown origin--but the habit of blaming the mother hasn't gone away.

"I thought, what must it have been like to raise a child that was probably far more affected by autism than my son was, and to be told you were to blame?" says Hanley. "It struck me that this was something that ought to be made public, because there was really nothing ever written."

While Hanley concentrated on her son--spending 40 hours a week on treatment and occupational, speech, and language therapy--the idea lurked at the back of her mind. Three years ago Timothy's condition had improved enough for her to do something about it. "Autism is a very visual disorder," she says of her decision to make a film. "You have to see it to get a handle on it."

After disappointing interviews with a handful of local filmmakers, she contacted Kartemquin Films. Gordon Quinn, the president and Hoop Dreams executive producer, said he'd do the project if Hanley, who'd spent eight years as a Wall Street securities trader, could raise the funds. He suggested they work with director David E. Simpson, whose credits include a 1995 movie about disability rights, When Billy Broke His Head...and Other Tales of Wonder.

Hanley and Simpson took turns interviewing the seven mothers they finally settled on as subjects--including a local African-American woman who was told her son couldn't have autism because the disorder only affected educated white people. Others were labeled psychotic, were forced to undergo psychoanalysis, or had their children taken away from them. "My connection to the disorder played a key role in getting the moms to open up and let us in," says Hanley, who's now working with Kartemquin on two new projects. "I could sort of talk the talk with them."

The film includes a riveting clip of Bettelheim explaining on The Dick Cavett Show that the origins of his theory lay in his experience at Dachau, where the prisoners' behavior paralleled that of autistic children. "They feel like everyone wants them to be dead," he said, and compared the parents to Nazi camp guards.

One thing Hanley hasn't done yet is revisit the pediatrician who misdiagnosed her son. "I really should send a copy of the film to him," she says. "With a note that says, 'This is how to diagnose autism--this is how it's done.'"

Hanley, Quinn, and Simpson, as well as five of the women featured in Refrigerator Mothers, will appear at Saturday night's premiere of the film at the Gene Siskel Film Center, 164 N. State (312-846-2800). A reception and discussion follow the 8 PM screening; tickets are $8. It will also be shown on Tuesday, July 16, at 9 PM on Channel 11.

Art accompanying story in printed newspaper (not available in this archive): photo/Robert Drea.

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